Wednesday, May 18, 2016

CFSAC Comments, Terri Wilder | Occupy CFS

 
 
"My name is Terri Wilder and I don't want my tombstone to say I died of government neglect."
 
* * *
We're ALL dying of government neglect.  They've thrown billions of dollars at cancer -- 200 times as much as we get -- with the result that some forms of cancer have a nearly 100% cure rate.  We have a ZERO cure rate.
 
And despite the fact that virtually no useful research has been done to produce a treatment, if we don't get cured and go back to work, the official reason is that we're "too lazy to work" rather than that there's no treatment that would get us well enough to return to work.

Pat Blankenship, 1949-2016, Rest, dear friend

 
"The physical symptoms can only make you sick or dead. But isolation makes you miserable every hour of your day. It never ends."  -- Pat's own words

Thursday, May 12, 2016

MAY 12 AWARENESS DAY

"They came to a doctor with Chronic Fatigue Syndrome; they left the doctor with PTSD." - Nancy Klimas, M.D., Miami Herald, March 24, 2009.

Stop the verbal abuse -- educate doctors that it's real, it's serious, it's not psychological.
 
ME/CFS is NOT a 'minor disease'.

The disability rates among ME/CFS patients are similar to those of people with multiple sclerosis, lupus, rheumatoid arthritis, heart disease and other equally serious diseases. Some patients endure years of being virtually home-bound or even bed-ridden because of ME/CFS.

Researchers at DePaul University estimate that every year ME/CFS costs the U.S. economy $17-24 billion*. Its prevalence, economic effect, disabling impact and chronicity make ME/CFS one of the most economically burdensome conditions of our time.
 
"ME/CFS is actually more debilitating than most other medical problems in the world, including patients undergoing chemotherapy and HIV patients (until about 2 weeks before death)." Canadian ME/CFS Consensus

"Research has shown that ME/CFS has been found to be more disabling than MS, heart disease, virtually all types of cancer, patients undergoing chemotherapy or hemodyalisis." Hooper and Marshall

"My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my ME/C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families. I split my clinical time between the two illnesses [HIV and ME/CFS], and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V." Dr. Nancy Klimas
 
 

Slightly Alive: For May 12, 2016: ME is not a "mysterious" disease.

 
The whole point of this blog is that NIH and CDC behave as if we knew nothing about ME.  That is not true.  It is not so mysterious.  You do not have to start from scratch as you slowly turn to investigate it again.  Bethesda and Atlanta may have been asleep, but the research community was awake.
 
* * *
Dr. Dowsett noted that in 1988, when the CDC changed the name from ME to CFS, all knowledge about ME and its connection to polio was lost.  And CDC wanted it that way.
 
Fortunately, they couldn't erase the memory banks of older doctors, like Dr. Dowsett, who'd already learned that Myalgic Encephalomyelitis and Poliomyelitis are related.
 
 
 
 

Saturday, April 30, 2016

SHARE YOUR STORY

http://homecfs.solvecfs.org/submit.html

Humans of ME/CFS: Share Your Story

The Solve ME/CFS Initiative has launched a campaign to help increase
awareness of —and ultimately research funding for—Myalgic
Encephalomyelitis/Chronic Fatigue Syndrome. The campaign, "Humans of
ME/CFS" is a takeoff of the popular "Humans of New York" photoblog and
Facebook page.

The aim of the campaign is to show the faces and stories of those
suffering from ME/CFS so that those who are in charge of allocating
research funds cannot deny the widespread devastation this disease has
inflicted on so many for so long.

We have created a simple form for you to share the impact this disease
has had on your life. You can find it here. A few things to keep in
mind about the form:

1. Your story must be told in 500 words or less. We know this will be
challenging since many stories have been decades in the making and
there is much to tell, but to have the impact we desire, they need to
be brief.

2. Your story should share your personal experiences and not read like
a medical chart. How would you describe your journey with ME/CFS to an
old friend you have not seen in many years and have only a few minutes
with? What is your life like with the disease? How has it affected
those around you?

3. You must upload a photo. We understand that this may be challenging
for some in our community, but it's essential to put a face with each
story. If you need help, perhaps a family member, neighbor or friend
could lend assistance.

4. While we ask for first and last names on the form, we will only use
first names and the first letter of your last name on this site.

Please contact us with any questions at HOMECFS@solvecfs.org.

We can't wait to read your stories!

Submit your story
https://solvemecfs.wufoo.com/forms/z18mic8a184bwdw/

Patients battle for justice

http://blog.oup.com/2015/09/patients-battle-for-justice/

Patients battle for justice

By Leonard A. Jason
September 28th 2015

Is it possible that a disease as impairing as Type II diabetes mellitus, congestive heart failure, Multiple Sclerosis, and end-stage renal disease could be repeatedly belittled and delegitimized by scientists and health care professionals? Tragically, this is the case for a devastating illness affecting over one million Americans, and these patients have been deprived of their basic rights to respect, appropriate diagnosis, and humane treatment.

In the beginning, patients with this illness had a credible name,
Myalgic Encephalomyelitis (ME), and diagnostic criteria that had been
developed by the distinguished British physician, Dr. Melvin Ramsay.
Yet, in 1988, the Centers for Disease Control (CDC) renamed this
illness chronic fatigue syndrome (CFS). Patients were unanimous in
their disdain for this trivializing term, but they were no match for
the supreme power and authority of the CDC. The new name placed
patients around the world in a compromised position, as they were now
forced to use a degrading and stigmatizing term in explaining their
illness to family members, friends, work associates and medical
personnel.

Patients were next characterized as having a relatively rare "Yuppie
Flu" disease, and flawed epidemiology was responsible for these
inaccurate and biased characterizations. If this were not enough, the
CDC in 1994 developed a case definition that did not require the
cardinal symptoms of this illness (such as post-exertional malaise and
neurocognitive impairments). When this porous case definition was used
to select patients, the resultant heterogeneity increased the risk of
failing to consistently identify biomarkers, which contributed once
again to dismissing those affected as having a psychiatric illness.
Misguided psychiatrists then developed treatment approaches focusing
on increasing exercise, even though the patients' chief complaints
were muscle weakness and exercise induced fatigue.

Rarely in the annals of recorded medicine has there been such a David
and Goliath-like battle, with impaired and sick patients trying to
defeat an entrenched medical and scientific establishment. Their story
of resistance is not one of an epic skirmish, but rather a veritable
war with health care professionals and scientists that has endured for
decades, as has been so well documented by Hillary Johnson.

This past year, in an effort to rectify these tragic abuses, the
Institute of Medicine (IOM) released a report that not only clearly
emphasized the debilitating nature of this illness, but also
strikingly rejected the stigmatizing name CFS and the defective case
definition. Unfortunately, particularly in light of decades of past
disastrous scientific blunders, the IOM once again imposed an
inappropriate name (i.e., Systemic Exertion Intolerance Disease) on
the patient community, but patients valiantly challenged this
recommendation by collecting data that exposed the spuriousness of
this foolish name change effort.  Even a federal panel called the
Chronic Fatigue Syndrome Advisory Committee at its recent meeting in
August has rejected this new name.

The IOM also released a new case definition to replace CFS, and our
published work now suggests that these new criteria would almost
triple the prior CFS prevalence rate, and this is in part due to the
inclusion of individuals who formerly had been excluded. Unwittingly,
this inadvertent action accomplished much of what Bill Reeves and the
CDC had attempted to do a decade ago when they proposed an ill-fated
expansion of the case definition.

Is there any way to salvage the damage inflicted on the larger patient
community by well-intentioned scientists from the IOM?  Perhaps we
might consider re-activating the brilliant scholarship of Dr. Melvin
Ramsay and the term Myalgic Encephalomyelitis, which would identify a
smaller more homogenous group of patients as having ME. In contrast,
those meeting the broader IOM criteria, which we might call
Neuroendocrine Dysfunction Syndrome (which had been recommended by the
patient inspired Name Change workgroup over a decade ago) could
replace CFS and this category would represent a larger group captured
by the key IOM symptoms. Those that do not meet the ME criteria or the
broader IOM criteria could be classified as having chronic fatigue,
which is the most general category, and represents those with 6 or
more months of fatigue. Such a tripartite classification system would
eliminate the detested term CFS, validate the original respected name
ME, differentiate ME from the IOM criteria, and provide a new
nonstigmatizing term for those not meeting the more restrictive ME
criteria. In addition, the broader IOM criteria could be used for
clinical purposes, whereas the more restrictive ME criteria could be
used for research purposes. Some scientists might prefer to consider
this tripartite grouping a matter of severity rather than categorical
differences, but all agree that differentiations of this type occur
with many diseases, and such a classification system has the potential
to clarify discrepant findings from epidemiologic, etiologic, and
treatment studies.

Ultimately, whatever decisions are made on the names and criteria, the
vetting process needs to be open, inclusive and transparent, with
patients playing a prominent, decisive, and leadership role in these
deliberations.

Image credit: Photo by Dr.Farouk, CC BY 2.0 via Flickr

Leonard A. Jason is a professor of clinical and community psychology
at DePaul University, director of the Center for Community Research,
and the author of Principles of Social Change and co-editor of the
soon to be published Handbook of Methodological Approaches to
Community-Based Research: Qualitative, Quantitative, and Mixed
Methods. Read his previous blog posts on the OUPblog.
http://blog.oup.com/index.php?s=leonard+jason

             

Thursday, April 28, 2016

Tuesday, March 29, 2016

'Chronic Fatigue Syndrome isn't What You Think it is, it's Much Worse

 
All this time, I hadn't taken his illness seriously, because I thought of it as that: an illness. In reality, it's a disease called myalgic encephalomyelitis, that robs people of their lives, often leaving them bed-ridden and unable to care for themselves.
 
... Currently, the National Institute of Health spends about $2,500 per person with HIV/AIDS to find a cure. They spend about $5 on ME/CFS.
 
... Before any major funding for NIH to study ME/CFS will occur, a drastic change in mindset needs to happen throughout the general population. We need to say "we believe you" to so many who have been told to simply cure themselves. We need to stand up for them and fight, because they can't.

No, it's not a typo

http://solvecfs.org/i-thought-it-was-a-typo

I Thought It Was a Typo…

By Zaher Nahle, PhD, MPA
Vice President for Research and Scientific Programs
Solve ME/CFS Initiative
August 21, 2015


During the course of interviewing for this position, I was reviewing the amount of government spending on ME/CFS. I came across a figure of $5.4 million in one article. I assumed the number must have been a typo. I thought, not only as a rational reader, but also as a scientist who directed a research laboratory and balanced budgets, that it must be $5 billion, with a "b," not million with an "m." After all, for a devastating illness destroying the lives of at least 2.5 million people in the United States alone and causing north of $17 billion per year in economic losses, a $5 billion expenditure seemed reasonable, if not absolutely necessary.

The real shocker, however, came the next day when I ran into that same
$5 million figure from a separate, trusted source. My shock turned to
outrage on behalf of the patient community. Could it be true? Could the mighty U.S. government commit only $5 million for this devastating, woefully understudied disease with no cure, diagnostics or defined pathology? To put things in perspective, $5 million can barely furnish a modest core facility in one science department and is the individual yearly budget of hundreds of medium-size labs investigating other diseases. It is also a fraction of what Roche Pharmaceuticals, for instance, spends on Research & Development in a single week.

And just when you think that you have seen it all, now even that
measly $5.4 million was unashamedly stricken from the prospective
Senate budget of 2016, the only disease to get such remarkable
"attention." The sad irony lies in the stark contrast of how we generously commit tens of billions per year in (commendable) foreign aid to alleviate human suffering across the globe, but fail to invest crumbs in the wellbeing of our own vulnerable population, people with ME/CFS.

While I have never been one to subscribe to conspiracy theories, I
have to wonder why the government continues to fumble repeatedly on
this particular issue. I'm reminded of the words of the science writer
Arthur C. Clark in 3001, The Final Odyssey: "Never attribute to
malevolence what is merely due to incompetence." ME/CFS patients are a
proud and a resilient bunch who are not asking for handouts. They are
merely demanding what is their inalienable right: that their
government invest in finding cures so that they can live dignified,
productive and meaningful lives like everyone else.

At the Solve ME/CFS Initiative, we are doing all we can to fill that
enormous research gap and drive collaborations that foster promising
discoveries. That said, we insist on a clear, tractable and
transparent federal funding agenda for ME/CFS as the most effective
path toward a cure. It is the responsibility of the government to find cures for diseases that afflict millions of its citizens, not the
other way round. We are darn serious about that!
 
* * *
I, too, have been told that I must be mistaken.  If ME/CFS is as life-changing as I say it is, it must be getting lots of research money.  If it's only getting $5M (in a good year), then it can't be as bad as I say it is.
 
Imagine the outrage if we told cancer patients that they could only have as much research as they could raise money for themselves.  There would be no surgery, no chemo -- they would get the same hopeless nonsense we get, "it has a name; we can't do anything for you but send you home to wait to die."

Klimas lecture on YouTube

Note: A presentation by Dr. Nancy Klimas from a couple years ago but
just uploaded to Youtube.

-----------------------------------------------------------

https://www.youtube.com/watch?v=UMimz3iDk0s

ME/CFS lecture | Dr Nancy Klimas | 2011 [Chronic Fatigue Syndrome /
SEID / New Zealand]
ANZMES videos
Published on Jun 24, 2015

Immunologist, and top ME/CFS researcher, Dr Klimas talks about Chronic
Fatigue Syndrome. This is a great resource for Doctors, patients and
researchers alike.

The lecture covers biological aspects of ME/CFS such as autonomic
dysfunction, hypotension, hormonal imbalances, immune abnormalities,
viral infections, restorative sleep, Fibromyalgia, aerobic thresholds,
and more.

Dr Klimas highlights a wide range of treatments. The number of levers
for managing ME/CFS may surprise you.

Keywords: Chronic Fatigue Syndrome, Myalgic Encephalomyelitis,
Post-viral fatigue, SEID

Breakthrough? Or another detour?

http://www.newscientist.com/article/mg22730283.000-chronic-fatigue-breakthrough-offers-hope-for-millions.html#.VZYiFEbQNf4

Chronic fatigue breakthrough offers hope for millions

02 July 2015
Magazine issue 3028


Misunderstood and neglected for more than 25 years, there is suddenly
new hope for people diagnosed with what was once cruelly called "yuppy
flu"


HAVING a condition that no one understands is bad enough. Having one
that many also doubt the existence of is worse. Yet that has been the
unenviable fate of millions of people diagnosed with chronic fatigue
syndrome.

CFS first entered the medical lexicon in 1988 to describe a cluster of
symptoms without an obvious cause that doctors were seeing in the Lake
Tahoe area of Nevada. The principal symptom was debilitating
tiredness, but people also complained of sore throats, headaches,
muscle pain and various other manifestations of general malaise.

The lack of a clear biological cause, the fuzziness of the symptoms
and the fact that many of the people diagnosed were young
professionals opened the door to a smear campaign. The media were
quick to dub CFS "yuppie flu".

Although it has shaken off some of its more pejorative nicknames in
recent years, CFS has struggled to lose the stigma. People with the
syndrome still say they are not taken seriously, blamed for their
illness, or accused of malingering. Treatments are often psychiatric,
which are a great help to many but unintentionally add weight to the
idea that CFS has no physical cause.

Over the years, medical groups have launched campaigns to have CFS
taken more seriously. The latest was in February, when the US
Institute of Medicine proposed making a clean break with the past by
renaming it systemic exertion intolerance disease. This has not caught
on as yet.

The unsatisfactory state of affairs is largely a reflection of the
fact that we do not have a good biological explanation for CFS. That
has not been for lack of trying, but even here the disease seems to be
a magnet for controversy. A paper published in 2009 in Science claimed
to have found an association between CFS and a mouse virus. The paper
was later retracted after other teams failed to replicate the result.

Now there is hope of a breakthrough. Researchers in Norway have been
trialling a drug normally used to knock out white blood cells in
people with lymphoma and rheumatoid arthritis. Two thirds of the
people who took it experienced major remission of CFS symptoms,
essentially returning to normal life, with bursts of vitality
unthinkable while they were ill (see "Antibody wipeout relieves
symptoms of chronic fatigue syndrome").

The discovery – which sprang from a serendipitous observation – offers
more than just the promise of a much-needed treatment. It also
suggests that the symptoms are somehow caused by antibodies originally
produced to fight off an infection. The researchers speculate that
they might disrupt blood flow, leaving muscles drained of energy.

If correct, this brings the scientific story full circle. CFS was
initially suspected to be a "post-viral" syndrome – the lingering
after-effects of an infection with Epstein-Barr. More importantly, it
could offer people diagnosed with CFS both physical relief and
psychological closure.

There are wider implications too. Pain and fatigue without an obvious
cause account for a large percentage of visits to the doctor, and
usually have an unsatisfactory outcome. On top of that, there are many
other conditions – Morgellons, for example – that struggle for
credibility. If the CFS mystery is finally solved, that offers hope to
countless others struggling with unexplained symptoms. It may take
another serendipitous discovery, but science is good at those.

This article appeared in print under the headline "Revitalised"

NIH Sidesteps Critical Problems with the ME/CFS Study - MEadvocacy.

 
On March 11th, MEadvocacy received a reply to our petition from Dr. Koroshetz. However, Dr. Koroshetz's reply and NIH/NINDS' actions sidestepped our crucial concerns. 

Monday, March 14, 2016

May 18 protest in Washington DC

http://www.meaction.net/2016/03/14/mecfs-protest-announcement/

Announcement: May 18th Protest in Washington DC!

March 14, 2016
By SH 4CFS

#MEAction is excited to announce its first protest in Washington DC!

Please join us May 18th for a protest outside of the Health and Human
Services building in Washington DC. Our goal is to raise the
visibility of this illness and the people living with it during the
May Chronic Fatigue Syndrome Advisory Committee meeting.

Because of the nature of our condition, we can expect to see many
patients in their wheelchairs, stretchers, or laying down. All
patients are welcomed and we encourage you bring your
family/friends/caregivers for support. In fact, we would like to
emphasize that even if patients can't attend, their support system is
welcomed!

When: May 18th 2016 at 12pm (Same day as the CFSAC Meeting at HHS)
Where: Health and Human Services Headquarters in Washington, DC
Why: Urgent Need to Increase ME/CFS Funding

The protest is being organized by #MEAction member Stacy Hodges. Stacy
is looking to put a team together to plan and execute the flagship
protest in DC, as well as satellite protests at HHS offices around the
country. If interested in helping, email ME.Protest@gmail.com.

Learn more/RSVP
http://my.meaction.net/events/me-cfs-protest

If you are unable to volunteer or attend, you can also support the
protest by donating:

Donations will be used to help cover:

  - A meeting room where participants can meet the day before to
discuss strategy and the timeline of events.
  - Shuttle transportation for participants.  This is necessary
because of the number of patients that can not drive, are in
wheelchairs or that may need to leave the protest early and return to
rest.
  - Signs/Literature/Printing Services
  - Equipment Rental (please see:
http://www.washingtonpeacecenter.org/eventequipment).
  - We are considering using donations to reimburse a fraction of the
hotel costs for those that attend to make this event more affordable
for unemployed/disabled patients.

This is an open source initiative and we are interested in your
suggestions for improving this protest!
Do you have questions or are you interested in volunteering? Please
email us at: ME.Protest@gmail.com
________________________________

What to spread the word about this protest? Save these tiles to your
computer and post them to social media:

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________________________________

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